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Friday, May 10, 2013

Today we have a special book review, by Taryn Skees of More Skees Please and it comes with a chance to win in our Mother's Day Book Giveaway! Thanks everyone, the giveaway is closed! Stay tuned for another giveaway soon.How to enter:

When Aiden was born in 2008 with Apert syndrome, it came as a surprise to us. We had no indication that anything was wrong during my pregnancy - the differences with his hands and feet were never detected, and his head growth was within normal range. As you can imagine, the diagnosis hit us like a ton of bricks. During his two week stay in the NICU we went through a roller coaster of emotions as we tried to understand and accept the life we had in front of us.

Once Aiden was ready to come home with us, we were given a list of doctor's appointments and follow-up visits that had been made on our behalf. We showed up for each one scared and confused. We weren't sure we were asking the right questions, didn't know if what we were hearing from each specialist was our only option and began to doubt ourselves as parents. It became overwhelming very quickly.

I remember going to the book store and scouring the shelves for something - anything - that might be able to guide us in this journey with a child with special medical needs. I knew there was probably nothing related to Apert syndrome because it was so rare, but anything that could lay out a road map to help us navigate the world of doctors visits, insurance issues and support options would have been incredibly helpful. While I did find a wonderful memoir about a mother and her son with Apert syndrome (Babyface: A Story of Heart and Bones) it quickly became apparent that the book I was looking for did not exist.

For the next several months I took careful notes at every appointment. I created a notebook - and eventually a binder - full of questions and answers related to Aiden's care. I decided that if a book didn't exist then I would write one to fill the void, as I was certain I must not have been the only one seeking the same.

Unfortunately, the time that all of Aiden's medical care required during those first 2-3 years kept pushing my book writing lower on my priority list. So you can imagine how extremely pleased I was when this past year, a new resource was published that fulfilled exactly what I wish I had as a new parent of a special needs child.

I came across an article introducing Margaret Meder's new book Uncommon Beauty: Crisis Parenting from Day One and immediately contacted her to find out how I could get a copy. Even though I was 4 years into our journey, I just had to read it - I knew it would still offer value to me in some way - and it most certainly did.

While it just so happens that the author's son also has Apert syndrome, the book applies across the board. Uncommon Beauty is a well-organized account of the major aspects involved with caring for a child with special medical needs. Ms. Meder beautifully weaves personal experiences throughout however it reads less like a memoir and more like a guidebook with tips and suggestions for every junction along her journey.

Reading Uncommon Beauty brought tears to my eyes. Not only because I felt as if I was realizing my dreams in the pages of this wonderful book, but because I pictured the next scared parent scouring the shelves at the book store, searching for that one resource that might help make things a little easier. I just know this is going to be an amazing gift for any family who is unexpectedly thrust into a very scary world.

From one special needs parent to another, I want to personally thank Ms. Meder for writing Uncommon Beauty...and for allowing me to cross off one of the items on my always growing "to-do" list. :)

If you would like to win a signed copy of Uncommon Beauty: Crisis Parenting from Day One leave a comment here on the blog and be sure to "like" CCAKids Blog on Facebook! One winner will be chosen on May 31, 3103.

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-Taryn*If you don't have a Facebook account, you can simply comment on this blog post.

I really would like to have a copy of this book. So many European families are looking for inspirations. I want to stay in touch with you all and continuing to be your advocate, brother, and friend. Love and Revolution!

Without the Groups that have been put together, to help the Families along with myself , with their knowledge, compassion , and being their as a true shoulder when you needed them , I don't know what any of us would have done. Apert Syndrome was such a dark place , you felt so alone , until we met and were able to share our fears , concerns and futures, with amazing families. The more that is shared of Apert Syndrome , the more we can teach society of this rare syndrome . And that our children do have a place and that beautiful can take on another meaning. As our children do have that special way about them and how they can brighten up any ones day with just a smile!

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